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INTRODUCTION: Haemophilia A (HA) is a congenital bleeding disorder caused by a deficiency/absence of factor VIII (FVIII) and characterised by frequent, acute and prolonged spontaneous or traumatic bleeding events, often leading to haemophilic arthropathy and progressive joint deterioration. HA severity is characterized by endogenous FVIII activity: mild (> 5-40%), moderate (1-5%), or severe (< 1%). HA poses a substantial clinical and socioeconomic burden on people with HA (PWHA), their caregivers, and society. This analysis evaluates clinical and patient-centric outcomes of a cohort of individuals with non-inhibitor HA sampled from France, Germany, Italy, Spain, and the UK in the 'Cost of Haemophilia in Europe: A Socioeconomic Survey II' (CHESS II) study. METHODS: CHESS II was a cross-sectional burden-of-illness study collecting clinical and socioeconomic data on adult (≥ 18 years) individuals with haemophilia A or B of any severity with or without inhibitors from eight European countries. Descriptive analyses were conducted examining physician-reported demographics, clinical and health resource utilisation information. PWHA-reported health-related quality of life (HRQoL) using the EQ-5D-5L and Work Productivity and Activity Impairment (WPAI) were also examined. Outcomes were stratified by HA severity and reported at country level. RESULTS: Demographics and clinical characteristics of the cohort (N = 880) were generally consistent across countries. Individuals with severe HA experienced more frequent bleeding events and joint disease despite broad use of factor replacement therapy long-term prophylaxis. A minority of those with mild or moderate HA also experienced such challenges. HRQoL and workforce participation diminished, and chronic pain increased, with increasing HA severity. CONCLUSION: This analysis provides up-to-date insights on the impact of HA across five European countries. Increasing HA severity was generally associated with worse clinical outcomes, HRQoL and workforce participation. These findings suggest a place for continued evidence-based tailored treatment and clinical management approaches in addressing the residual burden of HA.
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BACKGROUND/OBJECTIVES: As part of a larger study, and in collaboration with rural primary health care teams, RaDAR (Rural Dementia Action Research) primary care memory clinics have evolved and continue to spread in communities across southeast Saskatchewan, Canada. This study focuses on the geographical areas of the four communities where RaDAR memory clinics were first developed and implemented and describes the services and supports available to older adults including memory clinic patients and families living in these areas. Our goal was to identify and describe existing programs and gaps, create inventories and maps, and explore the service experiences of family caregivers of people living with dementia in these rural areas. METHODS: Using a qualitative descriptive design, an environmental scan of services was conducted from December 2020 to April 2021 using focus groups (n = 4) with health care providers/managers (n = 12), a secondary source (e.g., program brochures) review, and a systematic internet search targeting four RaDAR memory clinic communities and surrounding areas via community websites, online resources, and the 211 Saskatchewan service database. Data were analyzed using content analysis; findings informed semi-structured interviews with caregivers (n = 5) conducted from March to July 2022, which were analyzed thematically. Geographic areas explored in this study covered an area of approximately 5666 km2. RESULTS: From the scan, 43 services were identified, categorized into 7 service types, and mapped by location. Seventeen services were dementia-related. Services included social/leisure activities (n = 14), general support/referrals (n = 13), transportation (n = 7), information/education (n = 4), respite (n = 2), in-home care (n = 2), and safety (n = 1). Service levels included local (n = 24), provincial (n = 17), and national (n = 2), and were offered in-person, remotely (or both) with 20 services across 4 service types offered remotely. In general, most services had no fees, involved self-referral, and providers had a range of education/training. Key interview themes reflected the need for locally available, accessible services that offer (i) individualized, flexible, needs-based approaches, (ii) in-home care and continuity of care, and (iii) both formal and informal supports. Key gaps were identified, including (i) locally accessible, available services and resources in general, (ii) dementia-related training and education for service providers, and (iii) awareness of available services. Benefits of services, consequences of gaps, and recommendations to address gaps were reported. In general, service providers and program participants were an even mix of females and males, and program content was gender neutral. CONCLUSIONS: Findings highlight a range of available services, and a number of varied service-user experiences and perspectives, in these rural areas. Key service gaps were identified, and caregivers made some specific recommendations to address these gaps. Findings underscore multiple opportunities to inform service delivery and program participation for rural and remote people living with dementia and their families.
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Demencia , Atención Primaria de Salud , Investigación Cualitativa , Servicios de Salud Rural , Humanos , Saskatchewan , Anciano , Atención Primaria de Salud/organización & administración , Demencia/terapia , Servicios de Salud Rural/organización & administración , Masculino , Femenino , Cuidadores/psicología , Accesibilidad a los Servicios de Salud , Población Rural/estadística & datos numéricos , Grupos Focales , Anciano de 80 o más AñosRESUMEN
Background: Rural persons with dementia face medical services gaps. This study compares the health service utilization of rural and urban community-dwelling individuals with incident dementia. Methods: This study used a repeated annual cross-sectional cohort design spanning a period from 2000 to 2019 analyzing age-adjusted rates for 20 indicators of service use and mortality one year after diagnosis in Quebec administrative databases. Results: Of 237,259 persons, 20.1% were rural. Most rural persons had more emergency department visits and hospitalizations, shorter stays, less alternate level of care and fewer family physicians' and cognition specialists' visits. All groups had similar long-term care and mortality rates. Conclusion: Policy implications of these disparities are discussed.
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Demencia , Población Rural , Población Urbana , Humanos , Demencia/epidemiología , Demencia/terapia , Quebec/epidemiología , Femenino , Masculino , Anciano , Estudios Transversales , Población Rural/estadística & datos numéricos , Anciano de 80 o más Años , Población Urbana/estadística & datos numéricos , Aceptación de la Atención de Salud/estadística & datos numéricos , Persona de Mediana Edad , Estudios de Cohortes , Hospitalización/estadística & datos numéricosRESUMEN
BACKGROUND: Primary health care has a central role in dementia detection, diagnosis, and management, especially in low-resource rural areas. Care navigation is a strategy to improve integration and access to care, but little is known about how navigators can collaborate with rural primary care teams to support dementia care. In Saskatchewan, Canada, the RaDAR (Rural Dementia Action Research) team partnered with rural primary health care teams to implement interprofessional memory clinics that included an Alzheimer Society First Link Coordinator (FLC) in a navigator role. Study objectives were to examine FLC and clinic team member perspectives of the impact of FLC involvement, and analysis of Alzheimer Society data comparing outcomes associated with three types of navigator-client contacts. METHODS: This study used a mixed-method design. Individual semi-structured interviews were conducted with FLC (n = 3) and clinic team members (n = 6) involved in five clinics. Data were analyzed using thematic inductive analysis. A longitudinal retrospective analysis was conducted with previously collected Alzheimer Society First Link database records. Memory clinic clients were compared to self- and direct-referred clients in the geographic area of the clinics on time to first contact, duration, and number of contacts. RESULTS: Three key themes were identified in both FLC and team interviews: perceived benefits to patients and families of FLC involvement, benefits to memory clinic team members, and impact of rural location. Whereas other team members assessed the patient, only FLC focused on caregivers, providing emotional and psychological support, connection to services, and symptom management. Face-to-face contact helped FLC establish a relationship with caregivers that facilitated future contacts. Team members were relieved knowing caregiver needs were addressed and learned about dementia subtypes and available services they could recommend to non-clinic clients with dementia. Although challenges of rural location included fewer available services and travel challenges in winter, the FLC role was even more important because it may be the only support available. CONCLUSIONS: FLC and team members identified perceived benefits of an embedded FLC for patients, caregivers, and themselves, many of which were linked to the FLC being in person.
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Atención Primaria de Salud , Servicios de Salud Rural , Humanos , Atención Primaria de Salud/organización & administración , Saskatchewan , Servicios de Salud Rural/organización & administración , Femenino , Masculino , Enfermedad de Alzheimer/terapia , Enfermedad de Alzheimer/psicología , Estudios Retrospectivos , Navegación de Pacientes/organización & administración , Investigación Cualitativa , Entrevistas como Asunto , Anciano , Grupo de Atención al Paciente/organización & administraciónRESUMEN
BACKGROUND: Rural-urban differences in health service use among persons with prevalent dementia are known. However, the extent of geographic differences in health service use over a long observation period, and prior to diagnosis, have not been sufficiently examined. The purpose of this study was to examine yearly rural-urban differences in the proportion of patients using health services, and the mean number of services, in the 5-year period before and 5-year period after a first diagnosis of dementia. METHODS: This population-based retrospective cohort study used linked administrative health data from the Canadian province of Saskatchewan to investigate the use of five health services [family physician (FP), specialist physician, hospital admission, all-type prescription drug dispensations, and short-term institutional care admission] each year from April 2008 to March 2019. Persons with dementia included 2,024 adults aged 65 years and older diagnosed from 1 April 2013 to 31 March 2014 (617 rural; 1,407 urban). Matching was performed 1:1 to persons without dementia on age group, sex, rural versus urban residence, geographic region, and comorbidity. Differences between rural and urban persons within the dementia and control cohorts were separately identified using the Z-score test for proportions (p < 0.05) and independent samples t-test for means (p < 0.05). RESULTS: Rural compared to urban persons with dementia had a lower average number of FP visits during 1-year and 2-year preindex and between 2-year and 4-year postindex (p < 0.05), a lower likelihood of at least one specialist visit and a lower average number of specialist visits during each year (p < 0.05), and a lower average number of all-type prescription drug dispensations for most of the 10-year study period (p < 0.05). Rural-urban differences were not observed in admission to hospital or short-term institutional care (p > 0.05 each year). CONCLUSIONS: This study identified important geographic differences in physician services and all-type prescription drugs before and after dementia diagnosis. Health system planners and educators must determine how to use existing resources and technological advances to support care for rural persons living with dementia.
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Demencia , Medicamentos bajo Prescripción , Adulto , Humanos , Estudios Retrospectivos , Hospitalización , Población Rural , Demencia/diagnóstico , Demencia/epidemiología , Demencia/terapia , Saskatchewan/epidemiología , Población UrbanaRESUMEN
As interprofessional collaboration (IPC) in primary care receives increasing attention, the role of electronic medical and health record (EMR/EHR) systems in supporting IPC is important to consider. A scoping review was conducted to synthesize the current literature on the barriers and facilitators of EMR/EHRs to interprofessional primary care. Four online databases (OVID Medline, EBSCO CINAHL, OVID EMBASE, and OVID PsycINFO) were searched without date restrictions. Twelve studies were included in the review. Of six facilitator and barrier themes identified, the key facilitator was teamwork support and a significant barrier was data management. Other important barriers included usability related mainly to interoperability, and practice support primarily in terms of patient care. Additional themes were organization attributes and user features. Although EMR/EHR systems facilitated teamwork support, there is potential for team features to be strengthened further. Persistent barriers may be partly addressed by advances in software design, particularly if interprofessional perspectives are included. Organizations and teams might also consider strategies for working with existing EMR/EHR systems, for instance by developing guidelines for interprofessional use. Further research concerning the use of electronic records in interprofessional contexts is needed to support IPC in primary care.
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Registros Electrónicos de Salud , Relaciones Interprofesionales , Humanos , Atención Primaria de SaludRESUMEN
OBJECTIVES: This study tested the association between neuroticism and six cognitive measures, and examined the potential mediating roles of social connection (social isolation and loneliness) among middle-aged and older adults. METHODS: This cross-sectional study was a secondary analysis of the Canadian Longitudinal Study on Aging (CLSA) Comprehensive Cohort, a sample of Canadians aged 45-85 years at baseline. Respondents with data collected at the first follow-up, between 2015 and 2018, were included (n = 27,765). Structural equation modelling was used to assess the association between neuroticism and six cognitive measures (Rey Auditory Verbal Learning Test immediate recall and delayed recall, Animal Fluency Test, Mental Alternation Test, Controlled Oral Word Association Test and Stroop Test interference ratio), with direct and indirect effects (through social isolation and loneliness). All analyses were stratified by sex, including females (n = 14,133) and males (n = 13,632). RESULTS: In unadjusted models, there was evidence of associations between neuroticism and all cognitive measures, except the Stroop Test interference ratio, suggesting higher neuroticism was associated with lower scores on memory and executive function tests. In the models of these other five outcomes, there was consistent evidence of indirect effects (through social isolation and loneliness) and, in some cases, direct effects. The results are discussed in context with limitations, including the use of cross-sectional design and alternative hypotheses to explain the association between personality and cognition. CONCLUSION: Among middle-aged and older adults, for both males and females, the findings suggest that the association between neuroticism and cognitive outcomes may be mediated by aspects of social connection.
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Envejecimiento , Cognición , Neuroticismo , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Envejecimiento/psicología , Canadá/epidemiología , Estudios Transversales , Estudios Longitudinales , Pueblos de América del Norte , Anciano de 80 o más AñosRESUMEN
AIMS: To explore the nature and extent of learning attained as a result of unaccompanied-by-faculty clinical nursing study abroad experiences and to answer the research question 'what is the nature and extent of learning during study abroad?'. BACKGROUND: Following the Covid-19 restrictions, international placement opportunities for student nurses are now resuming. In light of this, it is an opportune time for nurse educators to reflect and consider the effectiveness of clinical study abroad placements as contexts of learning, especially in relation to attainment of desired learning outcomes such as personal and professional growth and the development of culturally competent global graduates. This is an important area to research as specific understanding in relation to the extent of learning and variations in learning between students is limited. DESIGN: The study was situated within the interpretivist paradigm to elicit experiences of study abroad. Aligned to this, a hermeneutic phenomenological methodology was applied to ensure these experiences emerged from the subjective horizon of student nurses. METHODS: Following ethical approval, two semi-structured interviews per student (post-return and follow-up) were conducted with student nurses who had undertaken a study abroad experience. Phenomenological hermeneutical data analysis for multiple context research was undertaken and a change-transformative learning theory lens was additionally employed to the analysis to differentiate between the extent of and variations in, learning attained. Twenty UK and European student nurses, who were registered onto a study abroad programme prior to the Covid-19 restrictions participated. RESULTS: Variations between participants were identified in relation to the nature and extent of learning. Participants experienced personal and professional growth and they experienced transformation in relation to self as a person, learner and nurse. However, variations existed when considering the attributes of global graduateness and cultural competence development. Whilst participants changed by expanding their knowledge in relation to global and cultural issues, some participants also appear to have concurrently experienced a reinforcement of ethnocentric frames of reference. CONCLUSIONS: Analysis revealed that study abroad offered opportunities for students to experience change and transformation. Whilst students demonstrated learning in both the domains of change and transformation, transformative learning in all identified outcome areas was not guaranteed. Whilst transformative learning was apparent when considering personal and professional growth, less extensive learning was demonstrated when considering development of the attributes of global graduateness and cultural competence. The paper therefore recognises the complex nature of study abroad experiences and recommends continued investigation in this field.
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COVID-19 , Bachillerato en Enfermería , Estudiantes de Enfermería , Humanos , Bachillerato en Enfermería/métodos , Aprendizaje , HermenéuticaRESUMEN
Background: Limited research exists on the use of specific health services over an extended time among rural persons with dementia. The study objective was to examine health service use over a 10-year period, five years before until five years after diagnosis in the specialist Rural and Remote Memory Clinic (RRMC). Methods: Clinical and administrative health data of RRMC patients were linked. Annual health service utilization of the cohort (N = 436) was analyzed for 416 patients pre-index (57.5% female, mean age 71.2 years) and 419 post-index (56.3% female, mean age 70.8 years). Approximately 40% of memory clinic diagnoses were Alzheimer's disease (AD), 20% non-AD dementia, and 40% mild or subjective cognitive impairment or other condition. Post-index, 188 patients (44.9%) moved to permanent long-term care and were retained in the sample; 121 patients died (28.9%) and were removed yearly. Results: Over the ten-year study period, a significant increase occurred in the average number of FP visits, all-type drug prescriptions, and dementia-specific drug prescriptions (all p <.001). The highest proportion of patients hospitalized was observed one year pre-index, the highest average number of specialist visits was observed one year post-index, and both demonstrated a significant decreasing trend in the five-year post-index period (p = .037). Conclusions: A pattern of increasing FP visits and drug prescriptions over an extended period before and after diagnosis in a specialist rural and remote memory clinic highlights a need to support FPs in post-diagnostic management. Further research of longitudinal patterns in health service utilization is merited.
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Caring for people living with dementia often leads to social isolation and decreased support for caregivers. This study investigated the effect of a Virtual Dementia-Friendly Rural Communities (Verily Connect) model on social support and demand for caregivers of people living with dementia. The co-designed intervention entailed an integrated website and mobile application, peer-support videoconference, and technology learning hubs. This mixed-methods, stepped-wedge, cluster-randomised controlled trial was conducted with 113 participants from 12 rural communities in Australia. Caregiver data were collected using MOS-SSS and ZBI between 2018 and 2020. The relationship between post-intervention social support with age, years of caring, years since diagnosis, and duration of intervention were explored through correlation analysis and thin plate regression. Google Analytics were analysed for levels of engagement, and cost analysis was performed for implementation. Results showed that caregivers' perception of social support (MOS-SSS) increased over 32 weeks (p = 0.003) and there was a marginal trend of less care demand (ZBI) among caregivers. Better social support was observed with increasing caregiver age until 55 years. Younger caregivers (aged <55 years) experienced the greatest post-intervention improvement. The greatest engagement occurred early in the trial, declining sharply thereafter. The Verily Connect model improved caregivers' social support and appeared to ease caregiver demand.
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INTRODUCTION: Depressive symptomatology is often associated with the onset of dementia, although the exact form and directionality of this association is still unclear. The aim of this study is to investigate whether depressive symptomatology at the time of dementia diagnosis was predictive of cognitive, functional, and behavioral decline over 1 year. METHODS: In a Rural and Remote Memory Clinic, 375 patients consecutively diagnosed with mild cognitive impairment, Alzheimer disease, or non-Alzheimer disease dementia completed the Center for Epidemiological Studies Depression Scale at first visit and 1-year follow-up to assess depressive symptomatology. The same cohort was evaluated for cognitive, functional, and behavioral decline through the completion of 5 clinical tests performed at the first visit and at 1-year follow-up. RESULTS: Depressive symptomatology at time of dementia diagnosis did not predict cognitive or functional decline over 1 year, although increases in depressive symptomatology over 1 year significantly correlated with higher caregiver ratings of neuropsychiatric symptom severity and related distress over that time. CONCLUSION: Increasingly severe depressive symptomatology over 1 year correlated with greater caregiver distress. This study points the way for future studies delineating the relationship between depression, dementia progression, and caregiver distress.
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Disfunción Cognitiva , Demencia , Humanos , Depresión/diagnóstico , Depresión/psicología , Pruebas Neuropsicológicas , Canadá , Disfunción Cognitiva/diagnóstico , Disfunción Cognitiva/psicología , Demencia/diagnóstico , Demencia/psicología , CogniciónRESUMEN
Base rates of low scores are typically determined from normative samples, which differ from clinical samples. We examined base rates of spuriously low scores for 93 older adults with subjective cognitive impairment presenting to a memory clinic. Crawford's Monte Carlo simulation algorithm was used to estimate multivariate base rates by calculating the percentage of cognitively intact memory clinic patients who produced normed scores at or below the 5th percentile. Neuropsychological tests included: Weschler Adult Intelligence Scale block design, digit span backwards, coding, Weschler Memory Scale logical memory immediate/delayed; California Verbal Learning Test immediate/delayed memory; Brief Visuospatial Memory Test immediate/delayed; and Delis-Kaplan Executive Functioning category switching, letter number sequencing, and inhibition/switching. An estimated 33.58% of the cognitively intact memory clinic population would have one or more low scores, 14.7% two or more, 6.55% three or more, 2.94% four or more, and 1.31% 5 or more due to chance. Base rates were then applied to a subset of clinical data: all with dementia and most with MCI had low scores that exceeded the base rates. Determining base rates of spuriously low scores on a neuropsychological battery in clinical samples could reduce false positives by using empirical adjustments for expected low scores.
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Continuing education for dementia has been shown to be beneficial by improving informal caregiver knowledge, dementia care, management, and caregiver physical and mental health. Technology-based dementia education has been noted to have equivalent effects as in-person education, but with the added benefit of asynchronous and/or remote delivery, which increases accessibility. Using Cochrane review methodology, this study systematically reviewed the literature on technology-based dementia education and its impacts on caregivers. Technology-based delivery included dementia education delivered via the Internet, telephone, telehealth, videophone, computer, or digital video device (DVD). In the review, twenty-eight studies were identified with fourteen included in a meta-analysis, and these data revealed a significant small effect of technologically based dementia education on reducing caregiver depression, and a medium effect on reducing caregiver distress in response to caregivers' observations of behavioral problems displayed by persons with dementia. No evidence was found for a significant effect of the educational intervention on caregiver burden or self-efficacy, which are known to be gendered aspects of caregiving. None of the studies included in the meta-analysis reported separate outcomes for male and female care providers, which has implications for gendered caregiving norms and aspects of care. Registration number: PROSPERO 2018 CRD42018092599.
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Cuidadores , Demencia , Humanos , Masculino , Femenino , Cuidadores/psicología , Depresión , Salud Mental , Carga del Cuidador , Demencia/terapia , Calidad de VidaRESUMEN
AIM: The study aim was to explore educators' perceptions of their experiences of participating in transnational education in nursing. BACKGROUND: In an increasingly globalised world, involvement with the delivery of transnational education has become commonplace across the international higher education sector. In recent years, transnational education within the academic discipline of nursing has developed at pace, evolving in response to a global need to invest in nurse education, address nursing shortages and strengthen nursing leadership. However, despite acknowledgement that transnational education is a complex activity that needs to be more fully understood, research specifically exploring transnational education in nursing is scarce, as previous studies predominantly focus on other academic disciplines. The study addresses this knowledge gap, advancing understanding of transnational education in the context of nursing. DESIGN: The study was positioned within the interpretivist paradigm and underpinned by a constructivist grounded theory methodological design, acknowledging the prior knowledge and experience of the research team in relation to phenomenon under investigation. METHODS: Ethical approval was obtained before the study commenced, ensuring adherence to key ethical principles. The study was conducted during May to August 2020, in a university in the North of England that provides undergraduate and postgraduate nurse education in the United Kingdom and transnational context. Participants were recruited via e mail and invited to complete a brief questionnaire, informing a preliminary theoretical sampling strategy. Ten educators with experience of transnational education across a diverse range of international locations participated in individual, semi-structured, online interviews that were recorded and transcribed verbatim. Data were analysed using initial and focused coding, constant comparison, theoretical memos and diagrams. FINDINGS: The findings uncovered three overarching data categories, each of which were crucial to supporting effective transnational education in nursing. Prepare- involved developing an understanding of the context of healthcare and education, being supported and collaborating with transnational partners. Perform- involved recognising language and cultural influences, adapting to the environment and implementing responsive educational pedagogies. Progress- involved recognition of personal development at individual level and valuing the benefits at organisational level. CONCLUSIONS: Although transnational education in nursing can be challenging and complex, it can offer worthwhile advantages for all stakeholders. However, effective transnational education in nursing is dependent on strategies which prepare educators appropriately and enable them to perform effectively, thereby promoting successful outcomes at individual, organisational and transnational partner level and facilitating advancement in future potential collaborative activity.
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Bachillerato en Enfermería , Educación en Enfermería , Estudiantes de Enfermería , Humanos , Teoría Fundamentada , Curriculum , Atención a la Salud , Docentes de EnfermeríaRESUMEN
AIMS AND OBJECTIVES: This study explored how Registered Nurses (RNs) in rural practice deal with psychologically traumatic events when living and working in the same rural community over time. BACKGROUND: Rural RNs who are exposed to trauma may be at high risk for psychological distress (e.g. secondary traumatic stress, vicarious trauma and post-traumatic stress disorder), in the context of isolated practice and slower emergency response times. DESIGN AND METHODS: Charmaz's constructivist grounded theory methodology was chosen for this qualitative study. Purposeful sampling was used to recruit 19 RNs from six rural acute care hospitals. A total of 33 interviews were conducted with 19 face-to-face initial interviews, 14 follow-up telephone interviews and 14 reflective journals. Adherence to the COREQ EQUATOR guidelines was maintained. RESULTS: Participants were exposed to a multitude of trauma-related events, with their main concern of being intertwined with events for life. They dealt with this by staying strong, which included relying upon others, seeking inner strength, attempting to leave the past behind and experiencing transformational change over time. Being embedded in the community left them linked with these trauma-related events for life. Staying strong was a crucial element to their ability to cope and to face future events. CONCLUSIONS: The psychological implications of trauma-related events when working and living in rural acute care practice settings are significant and complex. Findings highlight the need for organizational support and processes and may contribute to improved psychological services and management practices. RELEVANCE TO CLINICAL PRACTICE: Key learnings were that rural nurses, who live and work in the same community, experience psychological changes over time from traumatic events that stay with them for life; employers fail to recognise the seriousness of this issue and trauma-informed policies with associated resources are lacking.
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Desgaste por Empatía , Enfermeras y Enfermeros , Trastornos por Estrés Postraumático , Humanos , Teoría Fundamentada , Población Rural , Cuidados CríticosRESUMEN
Increased intraindividual variability (IIV) has been linked to outcomes such as cognitive decline and dementia, suggesting IIV might add valuable diagnostic information beyond traditional neuropsychological interpretation. We explored whether a subtype of IIV, dispersion, can provide additional information for dementia diagnosis. In a sample of memory clinic patients, three cognitive status groups were identified: subjective cognitive impairment (SCI; n = 85), amnestic mild cognitive impairment (a-MCI; n = 16), and dementia due to Alzheimer's disease (AD; n = 48). Dispersion was computed as intraindividual standard deviations across multiple neuropsychological measures within three cognitive domains (executive functioning; immediate and delayed memory) and was compared for each diagnostic group using profile analysis. Patients with AD and a-MCI demonstrated less dispersion than patients with SCI in delayed memory. Results support existing theoretic perspectives on cognitive variability and age-related cognitive decline but suggest floor effects underlie suppression of dispersion in amnestic cognitive presentations. Questions remain about the contribution of IIV beyond impressions of impairment versus no impairment in these constrained representations of cognitive domains. Future investigations should investigate variability in SCI groups against controls to examine whether observed dispersion similarities between SCI and a-MCI or AD in immediate memory and executive functioning are meaningful.
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With increasing numbers of persons living with dementia and their higher rates of hospitalizations, it is necessary to ensure they receive appropriate and effective acute care; yet, acute care environments are often harmful for persons with dementia. There is a lack of dementia education for acute health care providers in Canada. Scotland presently delivers a dementia education program for health care providers, known as the Scottish National Dementia Champions Programme. The objective of this Policy and Practice Note is to present the collaborative work of Scottish experts and Canadian stakeholders to adapt the Dementia Champions Programme for use in Canada. This work to date includes: (a) an environmental scan of Canadian dementia education for acute health care providers; (b) key informant interviews; and, (c) findings from a two-day planning meeting. The results of this collaborative work can and are being used to inform the next steps to develop and pilot a Canadian dementia education program.
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Demencia , Personal de Salud , Humanos , Canadá , Demencia/terapia , EscociaRESUMEN
OBJECTIVES: This study investigated patterns in health service usage among older adults with dementia and matched controls over a 10-year span from 5 years before until 5 years after diagnosis. DESIGN: Population-based retrospective matched case-control study. SETTING: Administrative health data of individuals in Saskatchewan, Canada from 1 April 2008 to 31 March 2019. PARTICIPANTS: The study included 2024 adults aged 65 years and older living in the community at the time of dementia diagnosis from 1 April 2013 to 31 March 2014, matched 1:1 to individuals without a dementia diagnosis on age group, sex, rural versus urban residence, geographical region and comorbidity. OUTCOME MEASURES: For each 5-year period before and after diagnosis, we examined usage of health services each year including family physician (FP) visits, specialist visits, hospital admissions, all-type prescription drug dispensations and short-term care admissions. We used negative binomial regression to estimate the effect of dementia on yearly average health service utilisation adjusting for sex, age group, rural versus urban residence, geographical region, 1 year prior health service use and comorbidity. RESULTS: Adjusted findings demonstrated that 5 years before diagnosis, usage of all health services except hospitalisation was lower among persons with dementia than persons without dementia (all p<0.001). After this point, differences in higher health service usage among persons with dementia compared to without dementia were greatest in the year before and year after diagnosis. In the year before diagnosis, specialist visits were 59.7% higher (p<0.001) and hospitalisations 90.5% higher (p<0.001). In the year after diagnosis, FP visits were 70.0% higher (p<0.001) and all-type drug prescriptions 29.1% higher (p<0.001). CONCLUSIONS: Findings suggest the year before and year after diagnosis offer multiple opportunities to implement quality supports. FPs are integral to dementia care and require effective resources to properly serve this population.
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Demencia , Servicios de Salud , Humanos , Anciano , Estudios Retrospectivos , Estudios de Casos y Controles , Prescripciones de Medicamentos , Saskatchewan/epidemiología , Aceptación de la Atención de Salud , Demencia/diagnóstico , Demencia/epidemiología , Demencia/terapiaRESUMEN
Participatory research approaches have developed in response to the growing emphasis on translation of research evidence into practice. However, there are few published examples of stakeholder engagement strategies, and little guidance specific to larger ongoing research programs or those with a rural focus. This paper describes the evolution, structure, and processes of an annual Rural Dementia Summit launched in 2008 as an engagement strategy for the Rural Dementia Action Research (RaDAR) program and ongoing for more than 10 years; and reports findings from a parallel mixed-methods study that includes stakeholder and researcher perspectives on the Summit's value and impact. Twelve years of stakeholder evaluations were analyzed. Rating scale data were summarized with descriptive statistics; open-ended questions were analyzed using an inductive thematic analysis. A thematic analysis was also used to analyze interviews with RaDAR researchers. Rating scale data showed high stakeholder satisfaction with all aspects of the Summit. Five themes were identified in the qualitative data: hearing diverse perspectives, building connections, collaborating for change, developing research and practice capacity, and leaving recharged. Five themes were identified in the researcher data: impact on development as a researcher, understanding stakeholder needs, informing research design, deepening commitment to rural dementia research, and building a culture of engagement. These findings reflect the key principles and impacts of stakeholder engagement reported in the literature. Additional findings include the value stakeholders place on connecting with stakeholders from diverse backgrounds, how the Summit was revitalizing, and how it developed stakeholder capacity to support change in their communities. Findings indicate that the Summit has developed into a community of practice where people with a common interest come together to learn and collaborate to improve rural dementia care. The Summit's success and sustainability are linked to RaDAR's responsiveness to stakeholder needs, the trust that has been established, and the value that stakeholders and researchers find in their participation.
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Demencia , Participación de los Interesados , Demencia/terapia , Investigación sobre Servicios de Salud , Humanos , Investigadores , Población RuralRESUMEN
BACKGROUND: Informal carers play a significant role in supporting people living with dementia; however, carers in rural areas are often isolated, with limited access to support services. Although dementia-friendly communities provide valued support for carers, access to them is limited as they are few and geographically dispersed. OBJECTIVE: This study's aim was to increase support and services for rural informal carers of people living with dementia by using information and communication technologies accessed through an integrated website and mobile app-the Verily Connect app. The objective of this protocol is to detail the research design used in a complex study that was situated in a challenging real-world setting integrating web-based and on-ground technology and communication. Therefore, it is anticipated that this protocol will strengthen the research of others exploring similar complex concepts. METHODS: A stepped-wedge, open-cohort cluster randomized controlled trial was conducted to implement Verily Connect across 12 rural Australian communities. The Verily Connect intervention delivered web-based, curated information about dementia, a localized directory of dementia services and support, group and individual chat forums, and peer support through videoconference. During the implementation phase of 32 weeks, Verily Connect was progressively implemented in four 8-weekly waves of 3 communities per wave. Usual care, used as a comparator, was available to carers throughout the study period. Participants and researchers were unblinded to the intervention. There were 3 cohorts of participants: carers, volunteers, and staff; participants were recruited from their communities. The primary outcome measure was perceived carer social support measured using the Medical Outcomes Study-Social Support Survey. Volunteers and staff provided feedback on their participation in Verily Connect as qualitative data. Qualitative data were collected from all cohorts of participants through interviews and focus groups. Process evaluation data were collected through interviews and memos written by research staff. Data on the costs of implementing Verily Connect were collected by the research team members and evaluated by a health economist. RESULTS: Between August 2018 and September 2019, a total of 113 participants were recruited. There were 37 (32.7%) carers, 39 (34.5%) volunteers, and 37 (32.7%) health service staff. The study was complex because of the involvement of multiple and varied communities of carers, volunteers, health service staff, and research team members originating from 5 universities. Web-based technologies were used as intervention strategies to support carers and facilitate the process of undertaking the study. CONCLUSIONS: The Verily Connect trial enabled the testing and further development of a web-based approach to increasing support for carers of people living with dementia across a diverse rural landscape in Australia. This protocol provides an example of how to conduct a pragmatic evaluation of a complex and co-designed intervention involving multiple stakeholders. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12618001213235; https://tinyurl.com/4rjvrasf. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/33023.